My
life as a carer, and a very special day!
 I feel that the time has
come to say a little more about that most
important period in my life, the years
between 1981 and 1997, when my life was
fully occupied in caring for my mother
and our activities for and on behalf of
disabled people.
It was a
couple of years after moving into Starley
Road that my mother first rose to
prominence in the Disability movement in
Coventry when she led a demonstration
from her wheelchair (with me the pusher
of course) and was featured on the front
page of a local newspaper. That story is
told in more detail on my tribute site to her, but it led
to our growing involvement with Coventry
Council of Disabled People as a natural
follow up from the benefit shop, which it
rose to be our main concern in life. It
gave focus to my mothers life, as
otherwise she had nothing to do, and it
gave something of an outside focus to my
life as well.
To begin
with I was the first secretary of the
Coventry Council of Disabled People, a
position which I took almost incidentally
as I was one of the keener and younger
ones at the first meeting, and at first
my work there was supporting the original
chairman, a blind man called David Kelly.
When he resigned to start up his own
business in bicycle repairs, I also
resigned to let my mother take over the
chair, which nobody has ever been able to
do better than her.
 My role was then
more subsidiary while she took up the
public limelight, as an able communicator
of ideas who had the press sympathy and
public support. I was of course always
behind her or with her but my main
contribution was in seeing that she
arrived at meetings, organising and
getting ready what she needed, and doing
all the background with all the research
and preparation for her. Much in the way
that most successful M.P's have their
researchers and spin doctors nowadays.
I was also
somewhat known for my opinions voiced in
the Trunk Calls newsletter, which I
produced, using the knowledge I had
gained at University and new skills I was
learning all the time on the computer, to
enhance my capabilities and save time, as
so much was needed in the physical care
that my mother needed.
Being a
person who does not sleep much helped a
great deal as I could work on many things
late at night, while my mother was in bed.
My public
appearances however were not so
successful. I was and am always full of
passionate feeling for the subject, but
my communication skills always let me
down. I would get heated and
perseverative in my arguments, and even
somewhat aggressive at times, which I
will readily admit did not always prove
an asset to the organisation or to my
mother, who had to either put up with me
or explain it away in her more diplomatic
fashion. I feel I am still suffering from
the harm I did to my individual
reputation at this time, in the search
for work in that particular sector in
Coventry, because there is hardly an
influential figure in the City who has
not felt the force of my wrath at some
time or other.
Early on
in this period, I recognised that it was
a problem, and recognised some of the
traits of my father in me. I sought
professional help, but I feel that the
problems were neither properly identified
or addressed at the time. I felt that the
psychologists and doctors wanted to
change me as a person, and in the process
take away the positive features as well
as the negative features of my behaviour.
The positive features being the depth of
feeling I had about the subject and
desire to make a better world for others.
And my single minded dedication and
perseverance in the subject, to the
extent that I was quite prepared to put
my physical health in jeopardy as well.
Above all I turned inward and became
excessively self reliant, not letting
others interfere in our lives at all.
My mother
too shared this obstinacy, which enabled
us to achieve some great things together
as well as to pay the price for both of
us, both in terms of health and mental
well being.
One of our
best achievements was the research we put
in together into transport, which led to
an extraordinary day in both our lives.
To begin
with my mother was without a car in a
world which was not designed to carry
disabled people on public transport. She
campaigned against the taxi and bus
companies, whilst I did as much research
as I could into putting together a
document designed to influence the Social
Services in Coventry into putting more
money into the most appropriate means of
transport for everybody, rather than
segregating it off into an ill funded
minority system. My mother was all for
that as well.
She sat on
the committees while I fed her the
material, which gave her words so much
more force.
 As it happens the production
of this report coincided with much else
that was going on in public transport at
that time. I had already submitted a
paper anonymously to the European
Ministers of Public Transport as a result
of a request from somebody we had met at
a conference on Community Transport, and
I had expanded this a great deal. I was
actually called upon to present this
document to another committee in
Birmingham which I and my mother often
attended as observers, showing that there
was at least one person in a wheelchair
who bothered to hear what decisions were
made on her behalf.
We
polished up this paper a bit and sent it
off eventually to the Department of
Transports Disabled Persons Advisory
Committee, when we heard at the other
committee that they had put a call out
for general papers. It was obviously best
to put it out as a joint paper as my
mothers name had more standing than mine,
as I was just seen as her somewhat
socially awkward and bad tempered carer.
To our
surprise it was taken up as one of the
few selected for a fuller hearing. That
is to say we were summoned to a meeting
of the DPTAC in London where my mother
was to present the paper and answer
questions on it. This was a great honour
as all the other papers came from well
resourced public bus companies, and local
authorities. You can read that report on my other web
site.
Transport
to London was no easy thing at that time.
Fortunately as we lived close to the
station it was only a short walk for the
first stage, but in those times it was
still commonplace for wheelchair users to
have to travel in the goods section of
the train without heat and amongst all
the parcels and sacks of letters. As for
the poor companion (me) well as there
were no seats you had to stand for the
whole journey.
When we
got to London, a taxi had supposedly been
arranged, by the ministry of transport no
less to pick us up. There were some Taxis
capable of carrying wheelchairs then, but
not many. We waited for what seemed like
hours and nothing came. I made desperate
phone calls to the company and the
ministry to find out what happened, and
still none came.
I phoned
up alternative companies and still none
came.
 In the end it was
by chance that we found our way. At this
time outside of Euston Station there was
a new service starting in special
minibuses designed to take disabled
people between the London stations as
wheelchair users were neither able to nor
permitted to use the underground system.
I was able to arrange for this service to
make a slight diversion from there
circular route to drop us off at the
Conference Centre, considering the nature
of the event we were due at.
This
service was run by London Transport and
they were so pleased to have their first
ever wheelchair user on the service, as
this was in fact its first day. Not only
that it just so happened that they had a
reporter on board from Capital Radio to
record the comments of the first user,
who just happened to be my mother. What a
turn out.
 Eventually and
somewhat late we arrived at the
prestigious Queen Elizabeth's Conference
Centre which is close to the Houses of
Parliament and Westminster Abbey.
Normally as this hosts all manner of high
level conferences it is protected by a
high level of security and all baggage is
screened like at an airport. It was quite
a sensation to be whisked straight
through this as if we were high level
diplomats. And in order to make up for
the mistake in the taxis a special lunch
was arranged just for us, with butler
service! like at a top hotel.
My mother
did of course have to sing for her supper
by presenting the report with me at her
side ready to turn to the relevant pages.
It was well received and I really do
think it helped to influence the thinking
toward the more widespread adoption of
accessible buses in mainstream transport
systems as well as promoting the case for
accessible taxis. As proved by the
difficulties of the journey even getting
there which reinforced the point like
nothing else.
It was
well worth all the trial and tribulation,
as our reception justified it all. It was
a day I shall never forget, and there
will never be another like it !
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